Conjoined Shaw twins prepped for separation

May 10, 2007 2:09 PM

About the surgery

* Catheters are placed in the boys' heads to drain excess spinal fluid during the operation

* Spinal cords and nerves are exposed

* Lasers and ultrasound are used to monitor and test nerve function

* Surgeons, based on what they find, decide how to separate the spinal cord

* The spinal cord is separated and the tube that holds the spinal fluid is reconstructed

* The spine is separated (option 1)

* Organ systems are separated

* The spine is separated (option 2) -- the boys are now physically separated

* One boy is taken to an adjacent room, and the medical team split in two

* Tubing for bodily waste to exit the body is created/repaired, as needed

* Incisions are closed up

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Conjoined twins born to a Sheboygan couple in May are spending their final hours together today as doctors ready them for a marathon separation surgery to begin early tomorrow morning.

Parents and doctors are optimistic the surgery, at Children's National Medical Center in Washington, D.C., can successfully separate Mateo and McHale Shaw, who are joined at the lower back and share portions of their spinal cord.

"That's the only way you can go into something like this," Ryan Shaw, 28, the twins' father, told the Associated Press. "The boys made it this far. Our spirit is very high."

Mateo and McHale were born May 10 at Washington Hospital Center to Shaw and fiance Angie Benzschawel, 25, who were to be married this month.

Today the twins will undergo a brief preparatory surgery before spending the night with their parents, said the surgeon who will coordinate the operation.

"Everybody's optimistic they will get through the surgery, although there are many potential challenges ahead of us," said Dr. Robert Keating, the chief of neurosurgery at Children's National. He will lead a team of more than 65 people as they survey the twins joined spine up close for the first time and decide how to separate the boys.

"My job is to try to figure out which part of the spinal cord belongs to which boy, and what we can do to preserve that and protect the neurological function as best as possible," Keating said in a telephone interview with The Sheboygan Press. "You're not going to know any of the true fine details -- what's working, what isn't working -- until you're actually in there looking at the spinal cord."

Keating said surgeons don't know exactly what they will find or how they will proceed because he has found no documented cases of twins joined as the Shaw twins are with the added complication of spina bifida, or a protruding spine.

Keating said 1 in 50,000 live births yield conjoined twins, and about one-fifth of those twins are pyopagus, or joined at the lower back.

The boys' spinal cord will have to be split, the tubing that holds spinal fluid reconstructed and portions of the spine built from scratch during the operation, which will last 14 to 23 hours, if they're lucky, Keating said.

"All bets are off (relating to time) if there are significant issues in the middle of all this," Keating said. "We have a number of places where we can say, 'Let's stop at this point and stabilize the boys.'"

Keating said the surgical team decided to separate the twins now because they are strong enough to tolerate the surgery and delay could complicate the procedure since both suffer from hydrocephalus -- excessive spinal fluid -- and are developing more shared nerve function.

At birth, McHale's neurological function was not working below the knee, while Mateo had function to his feet, Keating said. Now, both boys have equal function, as McHale is borrowing from his brother.

"When you touch one boy's foot, the other seems to feel it as well," Keating said.

The boys will remain at the hospital several weeks after their separation, but what happens after that is unknown, Keating said. Spina bifida is the biggest long-term concern, he said.

"That's probably what worries me the most, where will this take them in 10 years, 20 years and for that matter 50 years. None of us know that answer," Keating said.

Shaw said he and Benzschawel have been realistic throughout the experience.

"We know the risks. We're in it for the long term," he said. "The road doesn't end with the boys being separated."

Keating said he has talked with Shaw and Benzschawel about the boys' future, but he has not made any promises and cannot say whether either boy will ever be able to walk. Among other complications is the fact that Mateo has a club foot.

Shaw has said the twins' surgery and other care is expected to total $5 million to $6 million by the time the couple is able to bring the boys home to Sheboygan.

Donations for Mateo and McHale can be made at any branch of the Kohler Credit Union or by mail at Mateo and McHale Shaw Fund, c/o Kohler Credit Union, 850 Woodlake Road, Kohler WI 53044.